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«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»

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Implications for healthcare and healthcare research Although the thesis is has not been written with a specifically medically trained readership in mind, both research design and results can provide recommendation for healthcare provision and healthcare research. In particular, I suggest that this thesis can make two contributions. The first one is perhaps an obvious anthropological contribution to other disciplines. This thesis flags the significance of locality and complexity. This research captured Turkish Berliners’ diabetes experience in a particular moment in time. Local particularities, such as the recently founded Turkish-language diabetes self-help group, are deeply influenced by current perceptions on illness burden, increasing public attention to obesity-related health issues, as well as experiences of deprivation, local economic and social structures and increasing political organisation. This also points to the importance to recognise that illness and healthcare is about both individual experiences and social and societal circumstances and changes. While medical research is not oblivious to particularity, locality or complexity, its criticism hinges on a subsequent problem of universality. If one is interested in applicability, how can one apply research findings that highlight their particularity in point and time to other settings? Indeed, one size does not fit all, but this can be a “universal” finding. Turkish Berliners have different needs, problems and opportunities than Turkish-origin people with diabetes in rural Bavaria, or than Turkish Londoners. Any intervention can follow a model or framework that has proven to be effective in varied settings, but one element of this model should be the acknowledgement of locality – local structures, politics and activities. Exploring how complex and fragile these social interrelations and sites are, can help to understand how delicately healthcare is therefore ultimately negotiated and delivered, and on which issues healthcare policy or intervention must concentrate their efforts. This perspective could help to recognise the importance of “good practice” in heterogeneous, complex and often challenged settings, as opposed to “best practice” that assumes equal foundations and resources for interventions.

The second contribution attempts less particularity, and is perhaps less challenging; it concerns methodology. This thesis specifically investigated active practices of healthcare. Rather than investigating what people perceive, tell, believe, experience, this thesis mainly explored what is done: the practices and tactics, activism and social participation. And to do so, it is important to observe such activities, not simply inquire about them. Healthcare research projects increasingly aim for interdisciplinarity and add a qualitative research component to its otherwise quantitative methodology. Often this merely appears to mean that “factual” statistical data collected with questionnaires are illustrated by “anecdotal” patient stories taken from interviews. I suggest that if there is recognition for patient empowerment and patient-centred care and research, this has to be reflected in methodology. Even more serious attempts of qualitative social research are largely limited to interviews. I propose incorporating more ethnographic exploration and participant observation in health and healthcare research. For example, obesity-related research is interested in investigating levels of physical activity. Questionnaires measure self-reported physical activity (Craig et al. 2003). However, people may not be honest about their levels of activity or cannot recall their activities accurately. To test such reporting, some studies prefer more technical data collection and count the number of steps taken (unfortunately missing activities such as cycling or swimming) or measure heart rates with special physical activity meters (e.g. Trost et al. 2005). As such quantitative data collection can only (and perhaps unreliably) collect possible levels of physical activity, not why lives may be active or sedentary, research increasingly includes qualitative methodology, namely interviews (e.g. Lawton et al. 2006). While open interviews better add to the understanding of general barriers and facilitators to physical activity, they still fail to capture everyday practices or problems: that it was the unexpected visit of friends that brought good intentions to go for a walk to a halt, the rain that made one opt for the bus instead of the bike, the depression that is rarely mentioned and that makes it hard to leave the house, or in turn, the housework or long shopping trips that are failed to be noticed as physical activity. Ethnographic research with participant observation explores exactly such everyday lives, their complexities, unexpected turns and taken-for-granted aspects, and would greatly inform health and healthcare research.

Contribution to social anthropology: beyond bio-power and biosociality The significance of complexities and particularities in everyday experiences can also inform social anthropological conceptualisations. Although anthropologists increasingly and enthusiastically acknowledge that social lives are disordered, theory often smoothes out such complexities (cf. Mol and Law 2002). This thesis has a broad ethnographic perspective on both individual and communal responses to chronic illness and was thus placed within a Foucauldian body of literature to look at disciplines of body maintenance and within a literature on biosociality to understand collective momentum in illness and healthcare. Testing such concepts with the perspective and experience of marginality, the thesis proposed to widen the scope of such frameworks and thus aims to contribute to the advance of anthropological knowledge and theory.

First, this thesis argued that one must look beyond bio-power. By that I mean that although disciplines of body maintenance, especially in a clinical context like diabetes management, invite Foucault’s concept of bio-power (1998 [1976]), this concept may not aid well to understand why people engage in diabetes selfmanagement. Foucault envisioned bio-power as a dispersed form of power that is represented, here, in medical institutions and professions, prevention and therapy strategies, and this might be an interesting perspective on mainstream diabetes care that teaches about healthy living disciplines as the responsibility of “good patients”.

However, in the case of Turkish Berliners bio-power does not seem to be very interested in controlling and monitoring its subjects. As formal healthcare is inadequate and often unreachable for Turkish Berliners with diabetes, they engage in self-help, namely peer education, in order to learn how to self-manage. Widening the perspective here away from this particular ethnography, contemporary studies on health(care) inequalities (Marmot 2006) indicate that such experiences of marginality do not only concern the Turkish Berliners in this thesis, and their experiences may resonate with those of other population groups.

This is, then, not a story of domination or resistance, but perhaps one of “technologies of the self” and self-care (Foucault 1990 [1984], 1997). Technologies of discipline or control, the clinical gaze, can be adopted by the patient and used to their own ends. Exploring those ends suggests that one should also look beyond Foucault’s notion of self-care. He described that self-care as a practice to achieve freedom, as an ethical exercise of maintaining a healthy body to become a good, autonomous citizen. While self-care may indeed assist people with diabetes to gain independence from clinical authority to a certain degree – and I argued that it is particularly the marginal that take care in their own hands as formal care is inadequate and clinical authority indifferent – I suggested in this thesis to motivations for self-care may be less normative.

My departure is, therefore, not from Foucault’s powerful theories, but from subsequent writings, that narrowly focus on Foucauldian framework to understand practices of body maintenance (cf. Petersen and Bunton 1997). Instead, this thesis suggested that self-care can be a much more mundane, practical exercise, in order to make one’s body better, to feel better and avoid complications and early death.

Bringing the body into analysis, as an anthropology of the body postulates (e.g.

Turner 1992; Fraser and Greco 2005), in a way, is a contribution of clinical research to anthropology. Not only does medicine frequently provide medical anthropology with research questions, it also shows us to look at the body, at symptoms, at pain.

Diabetes is about tiredness, numb feet and hands, bad eyesight and failing kidneys and such physical experience needs to be acknowledged (Millward and Kelly 2003).

Conversely, ill bodies can be just that. By that I mean that life with chronically ill bodies may affect life trajectories for some (cf. Bury 1982; Williams 1984), but they might only be part of what are complex and sometimes challenged social lives. A diabetic body does not create new identities or notions of personhood, when deprivation or depression may be as formative as a diabetic body. On the other hand, an illness, or rather its tactics of self-care could, in challenged lives, provide an opportunity to cope.

As its second major argument, this thesis proposed to expand upon conceptualisations of biosociality. Biosociality was conceptualised by Paul Rabinow (1996a) as social groups of patients or patients-to-be that form around biotechnological innovations. Human genetics, in particular, alter life and biology and can thus change how bodies, illness or illness risk is perceived. Biosociality is thus an interest group that forms around a shared and (re-)imagined biology, and although Rabinow himself was more interested in the science labs that created such new biologies, subsequent research that took on this concept ethnographically explored what such biosocialities could look like (cf. Gibbon and Novas 2008a). I critiqued two aspects in this body of literature. First, I argued that biosociality can happen at the margins and can even be tool of the marginal. While previous literature claims that those at the margin of society, in particular those living in deprivation, lack the means to engage as biosocial advocacy groups but are merely bio-available (Bharadwaj 2008; Sunder Rajan 2008), research participants in this ethnography formed a sociality around their diabetes specifically as they found themselves at the margins of a formal healthcare system. Also, it was not biotechnological innovation that created sociality around their biological, diabetic bodies, and this sociality was not marked by technological organisation or patient rights’ advocacy for access to technological innovations. Instead, Turkish Berliners organised sociality around diabetes care in a societal momentum of deprivation and provision gaps as well as increasing stratification, professionalisation and political organisation. Biosociality is, then, a means for practical bio-activism for individual and communal support in healthcare. To broaden the perspective, I suggest looking beyond Turkish Berliners’ experience; as diabetes is a mundane illness, and often overlooked in anthropological research, there is a plethora of such mundane illnesses and it seems fruitful to look at the socialites they create, which may not always be high-profile in their motivation, concerning high-profile illness or exciting or frightening biotechnological innovations.

Moreover, investigating who is involved in such biosociality, I proposed a more complex structure than previous research seemed to suggest. While the involvement of various domains is acknowledged in this literature, namely science, industry, the state, the voluntary sector (Gibbon and Novas 2008), this ethnography explored who represented and occupied these domains. Rather than finding separable positions, people occupied multiple and fluent roles. While previous literature may imagine the patient-cum-activist, the participants in this ethnography had multiple roles added by their diabetes care involvement: a patient or doctor could also be expert-cum-teacher-cum-activist-cum-businessperson. Such complex biosociality around informal diabetes care, then, also interlinked these various domains of economics, politics, medicine/healthcare and activism in local micro-politics. I thus finally argued that the concept of biosociality should not only consider economics in terms of the biocapital of pharmaceutical biotech industry (e.g. Sunder Rajan 2006) or politics in terms of the influence of the state and advocacy for patient rights (e.g.

Gibbon 2008). Economics also relates to conflicts and alliances around everyday funding concerns and local entrepreneurialism, everyday politics revolve around local struggles over authority. Ethical concerns are not occupied with universal human rights issues but frame everyday conduct within a biosociality that is negotiated around cooperation and conflict, care and capital, communal self-help and political and economic agendas.

Finally, I hope to contribute to understandings of marginality with this thesis. As anthropologists like to point out the importance of locality and complexity, another popular concept is agency. My research participants may live in social deprivation and ill-health but they are actively engaged in health practices, healthcare provision, peer education and community health advocacy. My contribution to anthropological knowledge, then, should be more than the argument that marginality can nonetheless involve agency, as agency is a problematic concept. Rather, this thesis explored what this agency involves in terms of active engagements and practices. This thesis could confirm that marginality should be understood as a relational concept, where positions of the marginal and central are not fixed entities but stand in relation to each other (Ecks and Sax 2005). Turkish Berliners experience marginality in the everyday deprivation and inadequate healthcare provision but Turkish-origin doctors occupy different positions to their patients, self-help group members make different experiences to other Turkish Berliners with diabetes, and to those without diabetes.

Illness and deprivation, but also social and political organisation shifts positions.

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